BENEFITING: National Fragile X Foundation
EVENT DATE: May 17, 2014
Danielle Flaim wrote -
Almost a year has gone by since my sister organized the 1st Annual Fragile X Walk in Northern Virginia last June. There was such a tremendous amount of support and they were able to raise $30,000. They are using that momentum and making it a yearly event to try and increase not only the money raised but also the awareness. So let me give you a little look into what Fragile X Syndrome is…
Fragile X Syndrome is the most common inherited cause of mental impairment. The syndrome occurs in approximately 1 in 3600 males and 1 in 4000 to 6000 females. This impairment can range from moderate learning disabilities to more severe intellectual disabilities. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development. FXS is the most common known genetic cause of autism. So how has this affected Jimmo…
James (Jimmo) was diagnosed when he was 6 months old. Jimmo is now 8 years old and his physical development has impaired him to be at a 2/3 year old level; he speaks with an iPAD (he is smart enough to piece together pictures within an app to be able to tell my sister what he wants to eat or watch,etc.. But cannot put the words together in speech) and many things you start to allow your 8 year old to be independent on Jimmo cannot do. But what Jimmo does have is the behavioral capabilities. I have always said this boy gives the best kisses (although sometimes sloppy) and hugs. I always say that Jimmo was brought into this world by such an amazing family – my sister, brother-in-law, and 10 year old niece (Georgia) give him such support and love and I truly believe that helps him with his development.
This past year alone, he has shown so much improvement in his development; he started 2nd grade at Fairview Elementary with one of the BEST teachers and teaching teams that he’s ever had. He’s making great progress with transitions, letters, colors and even some sight words. He loves to ask his sister to play Wii bowling! I think it’s getting a little old for Georgia but she’s a good sister and most of the time she entertains him. This has translated to a new fondness for bowling. Despite the loud noises of a typical bowling alley, Jimmo would bowl every day of the week if we let him.
Their biggest accomplishment in the past year just occurred recently. He started riding the bus to school!! My sister always said that Jimmo could ride the bus when he could say the word “bus”, but their hearts have settled on the fact that there is high probability at this point that he might not talk and the poor guy really likes the big yellow school bus, so now after a lot of preparations, he is a school bus rider!
The walk’s goal is to raise money to help sustain research thru the National Fragile X Foundation to ensure the best trials and therapists possible. This year the group is looking to raise $50,000 and I am looking for your help! I know that everyone has a cause that is worthy and important these days and I understand the wallet spreads only so far. Please know that I appreciate each and every dollar you donate to support my nephew.